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April 17, 2013 / tgexp

The Team Gleason Experiment Peru – SG

Team Gleason with Peruvian Porters and the NFL film crew.
Team Gleason with NFL film crew and the Peruvian tour guides. 

I love exploring this world physically, mentally & spiritually.  I most enjoy this exploration in the form of adventure travel.  As an ‘adult’, I have been fortunate to spend significant time adventuring.  Nicaragua, Indonesia, Galapagos, Easter Island, Tazmania. These are on the list of places I have been. Travel allows one to see their world from a new perspective. The world is diverse, geographically, politically,economically, religiously and culturally.  This diversity enriches one as as they return home with new perspective.

As a result, when I was diagnosed with ALS, I made it a point to find a way to continue my adventures. Additionally, I thought sharing these adventures with other ALS patients and then documenting these adventures would help raise awareness on a Global scale. From this concept the Team Gleason Experiment was born.

Our hypothesis is as follows: By producing & documenting epic life adventures for ALS patients, we can positively impact patient families, raise awareness globally, and ultimately, be a catalyst for a cure.

My travel style has change dramatically. In 2000 my brother & I camped in Popollo, Nicaragua with some surfboards, one change of clothes, a tent,  thermarests, bananas, bread, and three gallons of fresh water. I went to New zealand in 2004, by myself with a backpack.  Today, we (Michel Rivers & I) arrived in Lima, Peru with two wheelchairs, a tank of oxygen, several breathing devices, a feed tube, a catheter bag, a neck brace, pill crushers, an ass pad, and 18 people, not including film crew.

In “the old days” I, more or less, picked a spot on the map, did a little research on the country, language, immunizations, weather, and packed a bag before my trips.  I When Michel & were in Chile in 2005, we had no plan other than to meet up with her family friends (Doug Tompkins). We had a few ideas on where we wanted to go, but nothing set in stone.  No reservations. No agenda. While in Chile, we made a last minute decision to hop on a plane to Easter Island. This is for another story, but it was the best decision we could have made.

For this Machu Picchu adventure, we have planned nearly everything.  I feel like we are on an expedition to Everest.  Guides. Oxygen. Evacuation insurance. Last week, I went to Duke University to use their hyperbaric chamber, to simulate altitude in Machu Picchu and Cuzco, its closest major city. We have been planning for months. Well, honestly, Michel & Clare (Team Gleason Co-Director) have been doing nearly all of the planning.

Kevin Swan & I met via twitter. He sent a tweet saying something about ‘kicking ALS ass’ and copied me on the tweet.  I went to his website (alifestoryfoundation.org) which was surprisingly awesome.  He had some crafty video clips that impressed me. Inspired me. Made me laugh. From that point, we started chatting a little and it was pretty clear that Kevin was determined not to let ALS define him.  He is continuing to live his life and has started a foundation  to help others do the same. The guy has some attitude. He is articulate. He is persistent. He seems like a good fit for the Team Gleason Experiment. Machu Picchu here we come…

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2 Comments

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  1. Joseph Pinto / Apr 22 2013 5:09 pm

    God bless you, Steve! You are one of my favorite Saints!! You constantly serve as an incredible source of inspiration & motivation

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  1. The Team Gleason Experiment Peru – Post by Scott Fujita | The Team Gleason Experiment

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